Radisson Blu Hotel East Midlands Airport,
Pegasus Business Park,
Friday 12th October 2018
Sunday 14th October 2018
Join us at the Huntington’s Disease Association Family Weekend – our annual event for everyone affected by Huntington’s.
Talks – we’ll be joined by speakers with expertise in care, support and research.
Workshops – we know that people need information about Huntington’s at different times depending on the stage of their Huntington’s journey, so we’ll be running a series of optional smaller, interactive workshops.
Social time – a chance for you to meet, learn and share with others who have similar experiences living with Huntington’s disease in the family.
SOCIAL: Our welcome workshop gives guests the chance to meet new people in an informal and friendly environment with fun and games expected!
TALK: What’s new in Huntington’s disease research?
Huntington’s research is changing at a fast pace, with lots of different avenues being explored. We’ll hear from Professor Anne Rosser, Professor of Clinical Neuroscience at Cardiff University, who will discuss some of the strands of research taking place.
WORKSHOPS (Choose 4):
1. Genetics and Huntington’s disease
Making the decision to have the genetic test, understanding the options around having children, and understanding the genetics of Huntington’s can be some of the more complex issues facing families affected by Huntington’s disease. Join Dr Alan Fryer, Consultant Geneticist, who will explain this topic in an informal workshop with plenty of opportunity to ask questions.
2. Talking to children about Huntington’s disease
Knowing what, when or whether to tell children about Huntington’s can be a difficult decision for parents, particularly in an age when so much information is available online. Come and join Matt Ellison, founder member of the Huntington’s Disease Youth Organisation (HDYO), to discuss some of these areas and chat about how to tackle this in a relaxed and friendly workshop.
3. Coping with challenging behaviour
Changes in the brain in Huntington’s lead to an alteration in people’s behaviour. Coping with these changes can be difficult for carers, and frightening for the person affected by Huntington’s. Hear from Professor Hugh Rickards, Consultant Psychiatrist, as he explains these behaviours and offers practical tips to help. There will be plenty of opportunity to ask questions specific to your situation in this informal workshop.
4. Advice on aids and adaptations
Sometimes some really simple ideas and pieces of equipment can really help improve the quality of life for the person with Huntington’s and those who care for them. Knowing what’s available and from where can be a real challenge. Occupational therapist Alex Fisher will offer some practical suggestions and answer any questions you may have at this welcoming, interactive workshop.
5. Relaxation techniques
Living with and caring for someone affected by Huntington’s can be a stressful experience. Why not join our Specialist Huntington’s Disease Adviser Poppy Hill, and learn some methods that can help you cope with tense situations.
TALK: Huntington’s disease: my story
Following his appearance on E4's Tattoo Fixers, join us to hear the moving and inspirational experience of Harry-Jon Morgan as he describes how his sister’s battle with Juvenile Huntington’s motivates him to fight for the cause.
SCREENING: Dancing at the Vatican
We'ree delighted to host the UK premiere of the documentary Dancing at the Vatican, which follows the stories of Huntington’s families from South America and their meeting with Pope Francis. This moving film goes on a journey with the families, many of whom had never been out of their own villages. It demonstrates the very nature of human resilience and shows what is possible with determination.
1. Insights from the European Huntington’s Disease Network
Bill Crowder, Head of Advisory Service, will give an overview of the breaking news from the European Huntington’s Disease Network conference. In his summary of the conference, Bill will reveal the latest research and care information discussed by researchers and patient organisations at the meeting. There will be plenty of opportunity to ask questions in an informal environment.
2. Relaxation techniques
Another chance for you to learn some techniques from our Specialist Huntington’s Disease Adviser Poppy Hill to help you cope with tense situations.
This weekend is for everyone affected by Huntington’s disease, whether family, friend, individual or professional, to come together to understand more about the disease. It’s for the whole family - with an off-site trip and activities arranged by our Specialist Youth Engagement team for children and young people (up to 16 years). Our youth workers will be on hand to supervise activities and be a source of support and advice. Previous years’ activities have included trips to local theme parks and a film morning.
Feeling isolated and alone in living with such a complex disease is a feeling known to many with Huntington’s in their family – but when we come together we’re a support network. The weekend enables people to make new and lasting friendships with others who understand. We learn, we chat, enjoy delicious food and dance into the night with our themed dinner dance on Saturday – this year it’s country and western!
Complete and return the booking form by email to firstname.lastname@example.org or by post to Suite 24 Liverpool Science Park IC1, 131 Mount Pleasant, Liverpool, L3 5TF.
If you have any questions, please get in touch by email: email@example.com or phone: 0151 331 5444.
* Formal notice of the Annual General Meeting can be found at www.hda.org.uk/AGM2018
** Speakers and workshop subjects may be subject to change